Friends who don't understand

[TNCanuck]

Does anyone else want to scream when a friend tells them to "stay off the internet", or "don't do any research if it upsets you"? Seriously, I can't imagine just idly waiting and not being proactive! My husband was only diagnosed at Stage IV because his doctor at the time "forgot" to follow up then missed the PSA reports after the first high reading.

[Tub111]

I fortunately didn’t have those problems. My friends were actively researching for/with me at that time. Sadly no one in his family was doing so and THAT made me want to scream.

Do your research, be proactive, but remember everything you find may make you feel these: hope, fear, anxiety, anger, helpless, encouraged, confusion and sad...but THAT IS OK!!!!

I still do research and regularly check on this site for up to date info.

Hang in there, it’s one hell of a ride for both of you. You’ve got this!!!💪

Sheri

[TNCanuck in reply to Tub111]

I'm so glad you had such supportive friends at that time. Most of mine do everything they can to support us. And I know the ones who advise me to "stay off the internet" are well-intentioned. I've always believed in not giving advice to someone if I haven't been through something similar. Would much rather hear "I know this has to be hard -- what can I do?". But in the end, it's all OK!

We're trying to very proactive. Thank you for understanding that. I'm slowly learning that the rollercoaster of emotions is normal and that I don't have to be brave and strong every second.

I've read a couple of your posts. I'm so, so sorry for your loss. The fact that you are still here supporting other people is a testament to what an amazing person you must be. And how lucky your man was to have you by his side! The smile on his handsome face in the photo leads to me think that he knew it, too.

XOXO

[Darryl Partner]

I've experienced that. I've learned to let such talk blow past me like a wind.

[TNCanuck in reply to Darryl]

I'm learning, Darryl! Thank you.

[Bluebird11]

We too had a PSA that wasn't reported to us at the time. I too have been the one to research. All I can say is the people who said I had done enough at the 3 year mark and leave it to the doctors were not correct. After 12 1/2 years of a Stage IV diagnosis my husband is still here with me.

If asked how and why? I can't give an answer to that. I do know we worked really hard. We did spend a lot of our own money. We are realizing that maybe everything helped. And, certainly being as prepared as the doctors prior to the visits helped. I can't read scans and I can't get into the detail they can, but I can get enough into the ballpark along with using common sense that we did circumvent situations that could have caused serious side effects.

We found our personal philosophy. We worked really hard and yet we also looked for the silver lining. We took good news as vacation time to let go. We filtered all information through the lens of quality of life. We were fortunate- plus, destiny may play a role in this.

it's changed out lives... I am pretty much alone with my emotions since only other wives and of course their husbands, for the most part, know what this journey is like. This group and everyone here plays a role in helping.. I've wanted to scream at people... Nerves run thin when fear and grief accompany us...

I used 'so far so good' for a very long time to get me through some of the rougher times. Being in the moment, even though my physical body felt anxiety helps a lot...

There's a book.. it's called 'the life-changing magic of Not Giving A F*ck"...

how to stop spending time you don't have with people you don't like doing things you don't want to do... it's talks about a Budget.. a not giving a damn budget...

It's a good little book, it helps focus us on what is integral.. and as Daryl, said... Blowing past it..

Watch for the gifts that are brought to you. Ask for help and then see what comes. Life is a Trip... for me I've considered this a Mission.. and I've now said.. Mission well done..

even though all the 'crap' still accompanies Mission well done..

[TNCanuck in reply to Bluebird11]

Sure sounds like we have similar approaches to things. I'm not wired not to be proactive and besides that, researching things is one way I can give us some semblance of control over our lives.

I've seen that book.....going to purchase and read it. Thanks! I've gotten VERY good at avoiding people and situations who are negative or toxic, including some of my close family members. My small stock of f*cks left to give is not going to be depleted by them. LOL

[Bluebird11 in reply to TNCanuck]

What a JOURNEY, isn't it?..... My cousin said of the book, that was a gift to me was: read it... underline it... read it again... underline MORE.. LOL.. she knows that it's part of this shift I'm in... I think pretty much it's a collective shift. We seem to all be reassessing our lives..

I'm grateful for this forum... and the brave, generous people who share or read... who know they aren't alone, though may feel alone.

[Running-on-empty]

Friends have absolutely NO !! idea what we as caregivers are going through . Absolutely none ..

[TNCanuck in reply to Running-on-empty]

I know. And it's usually worse when they THINK they understand what we or our guys are going through. God forgive me if I've ever assumed I understand someone else's problems when I'd never had any experience remotely similar to theirs.

[Mauvemood]

I have never heard that but when our MO would suggest a new treatment I would have already done tons of research and asked questions they weren't expecting. Most if our friends ask when will your husband improve. I politely say he won't be but he will be enjoying the time he has left. We have a few wonderful friends who understand. They offer assistane and are there when I need them. This site has been a extremely helpful. I spend my evening hours going through the posts.

[TNCanuck in reply to Mauvemood]

I'm really glad you've found help here. I have too, and am so grateful for the information and support. I do what you do, research in advance so I can ask intelligent questions. It's so hard when people assume our guys are "cured" after chemo or other treatments. I'm so happy that my husband feels pretty good and looks like himself, but it does seem to confuse other people. Just one more reason we should all be kind to others --- we never know what they might be battling.

[Darryl Partner]

We all need as much up to date information as we can process